How to stay active with a health condition

Zoe McKenzie is a Physiotherapist, Personal Trainer and Pilates Instructor who lives with several health conditions including Fowler’s Syndrome, which leaves her relying on a suprapubic catheter. Zoe has made it her mission to help others with chronic health conditions with exercise and movement, and she has written a book about how to start and sustain an exercise routine.

Here Zoe, tells the Bladder and Bowel Community her top 5 tips on being active with a medical condition. 

As a physiotherapist specialising in working with clients battling chronic conditions, I understand the unique challenges that come with staying active while managing health symptoms that impact our daily lives.

My journey with chronic illness began at the age of 13 with Ehlers Danlos Syndrome, and over the years, I’ve faced a multitude of additional diagnoses, including Chronic Migraine, Postural Orthostatic Tachycardia (PoTS), Gastroparesis, and Lupus. My bladder stopped functioning several years ago due to Fowlers Syndrome and I have since used a supra pubic catheter. 

These experiences led me to establish ‘Actively Autoimmune’, an online exercise platform, driven by my frustration at the lack of support for individuals striving to exercise with chronic conditions.

Exercise has always been important to me, but this became even more vital as a way to support my body through the many ups and downs with my health. Movement helps me reconnect back with my body after hospital stays and surgeries, it helps me feel strong to help me function, it calms my body to help manage pain and regulate my nervous system and enables me to find joy and gratitude from even the smallest exercise accomplishments! 

These are just some of the additional benefits exercise can bring us and we are constantly told how important exercise is for our health. Society, medical professionals and anyone with well-meaning advice tell us to exercise but we are not often shown how to exercise with fluctuating symptoms from health conditions. 

Everyone has barriers to exercise, whether that be not having the time, or limited access to appropriate resources to be able to exercise, to struggling with knowing what to do. However, with a chronic condition, we have those multiplied and a whole other set of barriers to contend with such as pain, low energy, gyms not being accessible, being house-bound or not having specialist support. It makes it really hard to know where to start or if you manage to start, very hard to keep up as a sustainable routine. 

Here are my top 5 tips for being active with a chronic condition:

1. Be kind to yourself 

Many people I work with are hard on themselves for not managing to exercise. So let go of the pressure you are putting on yourself and take away any guilt you have. Acknowledge how hard it can be and speak to yourself the way you would speak to your friend who wants to start exercise.

You would not berate your friend for only managing a short walk, so why do that to yourself? Try to talk to yourself in a kind way and stop trying to bully yourself into exercise. 

2. Start low, go slow 

A lot of the time we try to do too much, too soon.  The best thing when returning to exercise or starting something new, is to start even slower than you think you need to. You want to find your baseline for movement, whether that be a 10-minute walk or 5 minutes of bed exercises or an hour-long cycle – everyone will be different depending on your starting point.

Once you have found a level you can manage regularly, then you can slowly increase only changing one thing at a time (the time, the distance, the weights, the repetitions etc) to slowly build up. Although it can feel frustrating, you’d rather do this than do too much too soon flaring your condition, having an energy crash or overloading your tissues leading to an injury or pain!

3. Have a plan, but be flexible with it

A plan helps us prioritise exercise into our day which makes it more likely we can do it regularly and build up a habit. Tools like habit stacking where we stack the exercise with something you already do, e.g. whilst waiting for the kettle you stand and do heel raises. Or you can try to find a set time in the day or certain days of the week that works best for your schedule.

We then want an element of flexibility to adapt this depending on what’s going on in your life and how you are feeling. For example, I try to go swimming on Wednesdays but sometimes my bladder has other plans, so instead of doing nothing, I  choose something that feels more comfortable that day.  If we are too rigid with our plan this can create more barriers which will have the opposite effect we want! 

4. Change what movement looks like 

You want to find a way to move that you enjoy and works with your body. It could be you are able to build up slowly and go back to playing tennis or to the gym but it may be since you have struggled with your health you have to reframe what movement looks like for you now. Sometimes we need to change what it looks like as a particular sport just doesn’t work for you anymore.

For years I tried to make running work for me, but that is not an option anymore. Instead I found the same joy from static cycling and Pilates which I can adapt to work with my body, rather than against it. You may need to let go of comparisons to what others can do, or what you used to do and instead focus on your ability now. 

5. All movement counts

Many people I coach, and something I used to struggle with too, is feeling stuck in the “all or nothing” mindset and bounce from one extreme to the other with our activity levels. As well as not helping our health, it’s also not helpful to be so extreme with how we view movement. 

Keep in mind:

• All movement counts, from a few minutes of gentle mobility movements to a short walk, to housework, to a heavy gym session or long bike ride!
• You don’t have to push yourself to the max for it to count. Not every session needs to leave you feeling exhausted, red, hot and sweaty. If you have this expectation, it can put you off or make it impossible to sustain. Instead find a balanced way that feels repeatable and remember that some is always better than none!

Further Information

For more practical advice, I have written a book to help those with autoimmune conditions, or those living with pain and fatigue, how to navigate movement in a way that works with their bodies. After specialising over the last 5 years in working with chronic conditions, I pulled my clinical experience, the latest research and my own lived experiences into a book called “Exercise well with autoimmunity”. It is a comprehensive guide including illustrated exercises to help you build a sustainable movement routine that works for your body and how to adapt it when our health changes. Available at local bookshops, Waterstones and Amazon. 

You can also work with me with 1:1 exercise coaching and join my accessible online and on-demand Pilates studio. Available at www.activelyautoimmune.com